“Obviously, there is a lot of fine print,” said Mary Freivogel, president of the National Society of Genetic Counselors. “Any time you do anything and you have a big, long agreement in front of you, I think so many of us are accustomed to just clicking ‘agree’.”
Even if you do read the whole agreement, which can go on for pages, you may not understand what you’re giving the company permission to do, said Hank Greely, director of the Center for Law and the Biosciences at Stanford School of Medicine.
“There is no legal limit on what they could do other than the agreement that you enter into with them which they may or may not choose to follow,” Greely added. “If they don’t follow it, the chance you would ever find out is very, very low.”
And it really doesn’t matter if your sample is earmarked for use in tracing Neanderthal ancestors or just looking for rare disease genes. It doesn’t matter if the sample is destroyed. The code itself is digitized and can be shared countless times and in countless ways.